Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Wednesday, May 18, 2016

Murder is Murder: Misleading Spin

On May 27, 2015 Bonnie Liltz murdered her 28 year old daughter Courtney at their home 30 miles outside of Chicago. Bonnie Liltz survived the murder suicide attempt. Her daughter, Courtney, died a week later. Bonnie Liltz has received a great deal of sympathy. Her lawyer reports she has gotten letters of support from all over the country. Prosecutors and Liltz defense attorney, Thomas Glasgow, agreed that jail time is not going to be suggested. Initially charged with first degree murder in the death of her daughter last week Liltz pleaded guilty in Cook County Court to the lesser charge of involuntary manslaughter. Prosecutors have recommended that she receive four years probation and mental health treatment. It is possible the judge could send Liltz to prison for 14 years however this is not expected to happen.

What have I left out of the above story? Sympathy for a murderer? No prison time for a mother who murdered her own daughter? How is this possible? More astounding, cases like Liltz though uncommon are not exactly rare. The variable left out is disability--severe disability. Bonnie Liltz adopted her daughter at the age of 5. She knew Courtney had cerebral palsy and profound cognitive deficits from damaging seizures when she was two years old. Courtney could speak only one word: "Momma". Over the last year all news accounts have been extremely sympathetic to Bonnie Liltz. There is no need for me to provide links. The sympathy is universal. News accounts have been dominated by raw emotion. Bonnie Liltz is described as a uterine cancer survivor. Diagnosed at 19 years old her body was ravaged by radiation therapy and her survival came at great cost--she could not conceive herself. Hence she adopted Courtney and boundlessly loved her. She cared for Courtney and attended to all her needs 24 hours a day for two decades. They shared the same room and their beds were mere feet apart. Her friends and family told the judge Bonnie was devoted to Courtney--she was in fact her life. A friend stated "Courtney was always clean, neat and nourished". When Bonnie Liltz pleaded guilty the court room was filled with supporters. As for Liltz herself she stated in court "I would like nothing more than to turn the clock back and have the ability to care for her again. I have pain inside that is beyond words". According to court transcripts, Liltz recalls waking up in severe pain and "soiling myself and my bed. My heart was pounding and I was shaking and sweating profusely. She had just been given a grim prognosis from a physician and was convinced she was dying. She wrote a hastily written suicide note and added a lethal amount of prescription drugs into her daughter's feeding tube. She then drank what she thought was a lethal cocktail of drugs in a glass of wine and expected to die. In the suicide note she wrote "I am so sorry to put you all through this but I can't leave my daughter behind. She is my life."
No doubt this is a tragic story. Suicide is the tenth leading cause of death in the United States. As a father, murder suicide is unimaginable. But murder suicide is not unimaginable for all parents. Lilts'z concerns are in fact common among those parents that care for a severely disabled child their entire lives. Curt Decker of the Disability Rights Network hears this from parents who care for their severely disabled children. They know all too well that eventually they will be physically unable to care for their children. They know their children will out live them. They are justily terrified and their worries are universal--who will care for my severely disabled child after I die. This population of people, severely disabled and their parents who do care 24 hours a day, are nearly invisible. The social supports are grossly lacking. Bonnie Liltz had good reason to be fearful for her daughter's future care. In 2012 Liltz had surgery and had to put Courtney in a nursing home for a week. Courtney did not understand why her mother was not present. Upon her return home Bonnie Liltz knew her daughter was upset and not herself. Bonnie Liltz was appalled by the substandard care her daughter received in the nursing home. According to court transcripts, Liltz maintained she was neglected. Liltz said Courtney was "covered in drool, her clothes were wet, and she was sitting in her own filth in a corner. It was with that memory that I felt the only place I knew she would be safe and happy would be in heaven with me".
I understand the emotion. Any successful or failed murder suicide is tragic. But lost in the emotion and support for Bonnie Liltz is a massive social failure. Parents of children with severe disabilities are terrified of what will happen to their children when they die. Think about this. Think of what this fear implies. Think of the injustice. Think of the substandard care. We are talking about the most vulnerable humans. How can we as an advanced civilization let this happen. For me the tragedy is that those parents who care for severely disabled children have a very real and legitimate concern. If I were in their situation I would be just as worried.

Compounding parents fears is the fact Bonnie Liltz is getting a great deal of sympathy. As many disability rights experts have noted, the implications for the sympathetic treatment Liltz has received is troubling. Did Courtney's life have less value? The lenient treatment surely indicates this. Murder is murder is it not? There is no doubt this case involved premeditation. Legal experts in Chicago seem to agree probation is an appropriate sentence. Jeffrey Urdangen, director of the Center for Criminal Defense at Northwestern University Pritzker School of Law believed the sentence recommendation was "not so much about sympathy but the prosecutor decided there was sufficient mitigating evidence. This is an exceptional case. Sending a woman who's got a critical illness to prison for an act for what some could interpret as mercy... There are so many facts that lessen her culpability"
These words terrify me. Is killing a severely disabled child an act of mercy? Is killing a person with what is perceived as being a severe disability mercy? The facts in this case are couched in kind words. Let me cut to the chase: Coutney Liltz's life was not valued. Life with a severe disability, especially a severe cognitive disability, is not valued. Such an existence is not valued and deemed less. Life with a disability is inherently inferior. Where does this line of logic end? Where does one draw the line? Are we going to try and eliminate all people with a disability as Hugh Herr of MIT is trying to do? Perhaps we just end the life of those with a severe disability? If so, how do we define and identify what is and is not a severe disability. If a person experiences a spinal cord injury at what level of injury is life not worth living. How about those that experience a traumatic brain injury? Are the lives of those in a minimally conscious state worth living? What about those with dementia? At what point is the quality of life so limited we can end their lives?

The public health care implications are significant. According to Glenn Fujiura, professor in the Department of Disability and Human Development at the University of Illinois at Chicago, 80% of adults with significant development disabilities live at home with aging parents. Liltz is in fact not an isolated case but a harbinger of future cases. Fujiura notes the Liltz case is a prime example of a larger broken system. I predict without substantial social change cases such as Bonnie Liltz will become increasingly common. This grim thought is obscured by the mainstream media that focuses not on the larger broken system of inadequate social supports for the most vulnerable but rather on the diminished value we place on the lives of those who live with severe disabilities. Bonnie Liltz needed robust social support not sympathy. She valued the life of her severely disabled daughter Courtney. The fact our society did not provide adequate social supports for Courtney Liltz is the real tragedy. A 28 year old woman died needlessly. A mother felt her only option was to murder her daughter and commit suicide. This is the tragedy. Worse, more deaths will follow unless we pay attention to the very real social injustice that took place.

Yes, as I finished reading your second blog on this I concur. I almost wept at the statement by the judge, probably the only one who saw things from the child's point of view. I just hate the idea of repeating any sympathetic screed for the murderer which arises only from a place of "inspiration porn." There are always options. I have some friends who are doctors who have a son with severe intellectual disabilities. I am always championing higher quality services. I seem to always be seeking to find people who are a reflection of me (think intellectual) working in special ed and helping professions, but they have explained to me that the people who work in the helping industry are their son's people. No different than if they had had a son who was gay. They see their job as ensuring his safety, and improving the culture by seeking to reduce conflicts through demonstrations of quiet, compassionate, non-aggressive solutions that work to maintain their son's connections with the people who WANT to support him, regardless of their intellectual capacity or their difficult circumstances. Bob Kafka spoke about this once when I was having lunch with him and Mike Auberger of ADAPT. They said everyone wants the witty attendant who is a great conversationalist. But hiring people like that denies the reality that many people with intellectual disabilities would make perfectly good attendants, and need the job. The reason parents murder their children is because they are so egocentric that they cannot work for change in the manner my friends do and never have. They don't really accept disability as the culture to which their children belong, they see their children as property and their ego will not allow them to consider other options. There are group homes that are good. Nursing homes are definitely appalling and short staffed, but there are options if we accept our responsibility to make ourselves aware of the disability community as a whole, instead of clinging to how damn perfect or saintly we think we are.